Tuesday, September 10, 2019

FAILING SAFELY/DARING GREATLY


By the end of August, almost everything I said was making G really, really mad. Could be sulking mad, could be yelling mad; whatever I had to say, he was angry. 

All the time. 

If I said, “Ask yourself if you really need thirds on ice cream,” he’d be enraged, for hours.

“You’ve already watched two movies today, how about taking a break?”: infuriating. 

“Let’s get some fresh air”: seething, at length, with rage. 

Screens, picking up stuff left all over the house, bedtime, laundry, hygiene, homework, manners, state of his room…All were loaded topics. 

One night, after a loooooooong day, I decided it was time to let go. Yep, all at once. It was time for Operation [G] Freedom. 

I didn’t actually even think it through. At all. I just sat down at the dining room table and said, “I’m done. You’re going away to college next year and I’m not going to be there to remind you to sleep, or get exercise, or make good choices. 

“This year is a great time for you to ruin your life in a safe context. So do whatever you want! I don’t want to fight with you anymore and you have to learn this stuff to succeed in life anyway!”

Then I got up and went back into the kitchen to do all the things.

A few minutes later, I heard, in a kind of tiny voice, “Mom? I don’t want to ruin my life.”

“Oh sweetie,” I said, “I don’t mean ruin-ruin your life, exactly. It’s just that the things I tell you that make you mad, those are things that you need to do or not do. So if you do or don’t do them at home, that’s a safe place to fail. 

“I’m hoping you’ll realize for yourself that I’m not nuts or trying to annoy you. And figure out why you need to do certain things, like sleep regularly or not be on your phone 24/7. That way, when you get out on your own you’ll be able to do what you need to do to succeed—like get some healthy exercise and finish your schoolwork on time—without making huge errors in judgment.”

“In fact,” I added, “let’s call it ‘playing college!’”

Now, I don’t think any of this would’ve worked a year ago, or even a few months. I’ve watched my friends whose kids don’t have developmental differences gradually reach this point years ago, but G needed extra time. 

Paradoxically, I'm basically giving him more freedom than many of his typically developing peers currently enjoy. That's because until very recently G didn't seem to have enough common sense or self-regulation to manage the tiny amounts of freedom he was given. Now, he only has this year of high school left in which to practice those skills before leaving for college. 

What he said next showed me he was ready to try. 

“I don’t know if I want that kind of freedom,” G admitted a few hours later. “I think I’m going to use the same parameters you gave me.”

And he has, for the most part. Admittedly with less sleep and more screens, but not so much that he’s messing up in school or in general. (Yet?)

So far, perhaps the most amazing thing to come out of this is a huge shift in our dynamic. G can actually, finally hear me again without taking offense. 

For…years, really, there was a lot of struggle between us over just about everything. Now, because I’m no longer trying to command him—and because he feels respected—he’s able to listen respectfully. 

I’ll make a suggestion from time to time—“At your age, you need 10 hours of sleep a night, so if I were you I’d figure out what time I need to get up and see what is a good time to go to bed”—and then ask, “Does that make sense?”

He’ll usually answer, “Yes.”  

When he resists—“You just had cross country practice. How about a shower?” “Nah”— I simply state a logical consequence—“Well, you’ll be smelly all day”—and move on.

I never, ever claim to have “The Answer.” All families and all individuals are different. For some families, this shift is probably inconceivable (as it was for us not long ago); for others, it’s not on the horizon at all. And who knows, we may need to ease back into more  regulation—it hasn’t been that long!

Also? Don’t get me wrong: I’m scared. Really scared. About ALL the menacing things, for the foreseeable future. But this does seem to be working for our family right now. 


Figure I — Some Of The Menacing Things (not shown: accidental pregnancy, loneliness, driving, unintentionally breaking the law…)

Moving forward, I’m planning to try to stop even making those suggestions. I’m going to dare to allow for the possibility of failure—AND the potential for entirely self-directed success. I’m stepping back so that G can achieve his own kind of greatness on his own terms

That means when he chooses to stay up all night or never, ever do his laundry, or leave random dishes and papers and shoes and books and pens and Magic the Gathering cards (and so on, and on, and on...) EVERYWHERE I am going to stay quiet and let him experience the consequences…Also on his own terms.

That means I can reduce my worrying-about-college time significantly, freeing up time to worry about a bunch of random things for wholesome activities. 

At the same time, I’ve been grappling with ways to help him gain increased responsibility as a fair and natural part of increased freedom. That means picking up after himself more, at the very least, right? Fingers crossed.

Love,
Full Spectrum Mama


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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Tuesday, July 9, 2019

NOT A DISEASE




As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 
“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative

When will we wake up to the full range of beauty?

Thanks and love,
Full Spectrum Mama


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
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Tuesday, June 11, 2019

PROM NIGHT

Dear Persons,

A few weeks ago, I really messed up.

I’m on my own with my kids all weekend every weekend and sometimes I get impatient or overwhelmed. 

Often, though, we have a really great time together.

Because I’ve always been a solo weekend parent, my children have been forced to accompany me to concerts, museums, and so on. And I’ve watched more kids’ movies than I could count, some of them actually pretty good. 

On this particular Saturday, my son, G, who is a junior in high school, was really getting on my nerves with a couple of exaggerated teenage slob behaviors that are not developmentally typical for an older teen. 

It’s not that the things he does actually bother me per se, it’s that I worry he will do those things out in the wider world—and get shunned for doing so. Or made fun of, or dismissed in ways he won’t even be aware of…

I was having a stressful work day, too (I edit a Sunday political mailing on Saturdays, but I also freelance and, when things are going well, often work weekends). 

But mostly it was just the relentlessness of G’s socially unacceptable behavior that was sending me back to the days when I worried if he’d ever function at all in “the real world.”

So I wasn’t at my best. 

Meanwhile, we were all looking forward to going to a big action movie that night.

Around 5 o’clock, I told G that we had one hour left before we’d have to leave for the movie. I asked him if he could stop being offensive for that period—and warned him that he would not be invited to the movie if he could not. 

As we were putting our shoes on, G was unable to contain himself from doing exactly what I’d asked him not to do.

And I lost it. Visions of his future as an outcast (never mind that he’s the sweetest guy ever) flashed before my eyes as I berated him and sent him to his room.

Now what was I going to do? After all, I don’t usually leave him home alone, and my daughter was dying to go to the film. 

I sat down on the couch with my head bowed.

I tried to breathe deeply while I debated between consistency/follow-through and wanting to get a break/have some dang fun.

I wish this was where I’d come up with a great solution.

But it was time to leave!

Without much clarity, I yelled up to him, “Okay, come on down. I’m not happy about this but Z [daugher] and I really want to go to the movie.”

“I want you to know I’m still REALLY upset with you,” I added. “You only had to keep it together for ONE HOUR! And you couldn’t. So don’t talk to me right now!”

We drove into town in silence, parked, and began to walk to the theater. 

As we approached Main Street, we began to see teenagers in formal dress.

“Hi [G],” some called out to him. 

It was Junior-Senior Prom Night.

My heart sank.

For weeks, G had been trying to get someone to go to prom with him. He’d asked every girl he knew and even posted a request for a date on Instagram. 

A week before, he’d finally given up. And I’d forgotten. But I’m sure he hadn’t. 

In fact all day, as he’d acted out, he was probably thinking about prom and wishing he was going. 

So, yeah—my heart sank.(Yes, I know my heart “breaks” and “sinks” quite a lot. It’s just like that more often when your child  has special needs. Yes, I do know what I’m talking about, as I also have a neurotypical child. My daughter also has special needs—having developed an attachment disorder before she was adopted—but she will have a much easier time being accepted, achieving success, and getting what she wants out of people and life in general. So my heart simply doesn’t break so much with her.) 

Why couldn’t I have been more understanding, more compassionate? Presumed competence on his part and given him the basic respect of assuming he has his own reasons and concerns? 

Why did I focus on a superficial thing when my son's heart is hugeand vulnerable? 

Are there other lessons here for me here about raising an extraordinary child? About supporting rather pushing him than through his challenges? 

In any case, I’ll think twice about making assumptions. And losing my temper.  

Love,
Full Spectrum Mama


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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Tuesday, May 14, 2019

WHAT'S THE BEST KIND OF PARENT?




Over the years, I’ve mostly thought it’s been an advantage for my son to have a neurodiverse mom. But the other day, as I bumbled about, I for some reason was hyperaware of how much there is I don’t get, whether because it’s implicit, or because I see things in a black and white way…

Some things I see as unilaterally wrong (it’s hard to give a neutral-ish example without offending anyone), including stuff most people see as excusable under certain circumstances (lying) or even “normal” (eating meat). I don’t actually judge others regarding these things—see below about my self-perception as nowhere near that entitled—it’s just how I myself think and live. 

Other subtleties and social niceties (and meanities!!!!) have only become obvious to me in my forties. 

It wasn't until, oh, about five years ago, that I realized some people have other priorities in their logic besides kindness. 

And I’m so literal that I didn’t even understand that being literal was a thing. 

For a REALLY LONG TIME.

Another thing I’m finally realizing is that there are a lot of things I may not have understood along the way. 

I knew from a very age that there was something different about me and my brain. To be more blunt, I “knew” there was “something wrong with me.” (This was unfortunately an impression that was initially created and then reinforced by those around me. It was, in some ways, a very different era.)

So I developed a lot of coping and passing (as “normal”) mechanisms. As an adult, I definitely pass as “getting” more than I get, and as (I hate this term, because it SO CLEARLY is a neurotypical one!) “high functioning.”

Still, how many people have thought I was a total wack job? How many times have I missed the deeper point of what someone was saying? 

I know I’ve taken people’s words as unkind or marginalizing when they weren’t meant that way. By the same token, I’ve sometimes hung around people who didn’t want me around for way too long, or accepted cruel behavior (toward me) on the basis of my own self-determined inability to “understand what’s really going on.” 

I guess I’m becoming aware that, for my son, having a mom who he can relate to and who understands his neurology definitely has its strong points. But it’s also probably hard for him that I'm “weird” or hurt or confused or clueless a lot of the time. 

Also, he thinks I’m a total loser, so he’s not always pleased to hear about our similarities. 

But there’s more. I found out I’m a Hufflepuff! [Non-Harry Potter fans might want to skip to the next paragraph.] All these years, I was cluelessly convinced I was a Ravenclaw/Gryffindor. In retrospect, I realize I was avoiding taking the sorting test because I was afraid it would reveal I was neither as clever (Ravenclaw) nor as brave (Gryffindor) as I held myself to be. Nope, I’m not. I’m a jolly, kindly, well-meaning, bumbling Hufflepuff. 

So I got to wondering whether it might have been better for my son to have a parent who was more, um, with it. Someone who could better play by the (unspoken) rules and sort of…finesse things in a way that I, in my bull-in-a-china-shop way, cannot. 

How often do I fail him because of my own neurodiversity and cluelessness? Would the best parent for him be someone who’s more savvy? Someone who’s more “successful” by real-world standards (which would include financially)? 

Wouldn’t it be great if he had a mother who understood how to teach him to really be successful—in real-world terms, taking effective, reality-savvy steps—instead of a literal-bumbling-weirdo-Hufflepuff?  

At the same time, I do know I love him exactly as he is and fight for him with all I’ve got. 

And I’m all he’s got, mom wise.

I realize this is a false dichotomy in some ways. Plus, I'm not really addressing the many other parental concerns and diverse ways of parenting, not to mention parental situations, from marital status to economic status, ethnicity to gender identity...

But it still sometimes feels like there's this overarching and fundamental split between those who share differences and those who do not, one I continue to work to mitigate however I can (in our particular area of difference as well as others). 

I imagine parents and loved ones who don’t “get” autism can probably relate from the other direction. Maybe they might not directly, personally understand why someone who’s neurodiverse can’t just “act like other people” or doesn’t perceive the world as they do. 

But they “get” that world—and can navigate it way better than most of us with differences. So they can help their children or loved ones with differences figure out how to get by in a world that’s not designed for them. 

I finally figured out that, in this context, good parenting is about being open to learning and growing, being curious, being accepting. To bring all that together, trying to understand is probably what makes the best parent—along with love, of course. 

So I guess whether you’re a little (or a lot) different and trying to understand people and institutions, or you totally get all that stuff but are trying to understand your kid, or anywhere along that spectrum—you’re good! 

Especially if you’re a Hufflepuff.

Just joshing. EVERYONE who’s lovingly trying to understand wins.  

Love,
Full Spectrum Mama


P.S. If you have a minute, consider answering some questions for a student at Drexel University who is working on a project about how much time parents of children on the spectrum spend on paperwork. Find her survey here. (I am in no way affiliated with this, but was asked to spread the word. Drexel actually has an apparently awesome program for college kids on the spectrum, BTW.)

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!


You are invited to the Inlinkz link party!